Nothing about us without us
Listen to people with Selective Mutism - they have plenty to say
Adults with autism use a slogan: 'nothing about us without us'. This should equally be the slogan of
people with Selective Mutism, or indeed any other difference.
Our interpretation of this slogan / point of view is: 'no policy, book, article, or organisation has any authenticity thus legitimacy unless it fully includes and fully promotes the expressed thoughts, opinions and experiences of members of the group it pertains to.'
iSpeak is an organisation which supports adults and teens with selective mutism, and their parents. Our motivation is nothing other than to express, explain and promote awareness of the condition we all intrinsically and deeply understand because we have / have had the condition ourselves. We have no interest whatsoever in making names for ourselves, pound / dollar signs, or professionalism (in the pejorative sense). Particularly in my own case I acutely hate the limelight. We draw attention to the condition - Selective Mutism - not to ourselves.
From my / our point of view, the opinions and first-hand experiences of people with SM should be included in every single policy, book or article which relates to us. Nothing should be said or written about us unless it includes us.
There is a strong message to be sent as far as we are concerned. People with Selective Mutism deserve their own voices to be heard - via whatever means they feel are right for themselves. They should not be spoken for. They should be enabled to express their own experiences regardless of what those experiences are. They should never be silenced even if others don't wish to hear what they have to say or disapprove of what is being said. Their voices, writings, artwork (whatever the medium for expression happens to be) should be heard, read, seen, perceived, understood.
For me communication (particularly verbal communication) has been a heck of a struggle. I have however come a very long way. iSpeak is so named because it is short for "I speak for myself" - something that used to be utterly impossible. My goal, our goal, iSpeak's goal is to support, enable and facilitate absolutely anyone else with Selective Mutism to achieve the same or better - for themselves.
Our new book contains the genuine life experiences of people with Selective Mutism
For more information about "nothing about us without us" / "nihil de nobis, sine nobis"